ACOhio

As I said I am new to HBoards & new to ask or share struggle with anyone.
This is looong history, but don't know how else to get it out, forgive me typing but have problems with. I am 42.
I was born w heart murmer, thought I would grow out of it, didn't. So when I was getting first school physical they found that I needed MAJOR surgery to repair(remember this was early 70's). I had a 40% survival rate. As you can see I survived the 14 hr surgery & lots of new blood. I was followed by cardio.. til I was 18. I was doing well, but I had (what I know now) were new symptoms that were brushed off as something that someone like me would have to live with, there was nothing wrong. Symptoms: severe fatigue & joint & muscle pain, skin changes: red/hot, purple/cold, redish purple dots & bruises coming & going, & others too numerous to mention. I was being told these symptoms were imagined, I was bringing them on myself that I must get past the surgery and be more active. I thought I was very active: rode bike 3+ miles to work in all Ohio weather, dance lessons, batton lessons, playing community sports, etc. & very active in school. As I went through school I smiled & pretended that I was ok (thinking the whole time I was crazy & wished that I could stop bringing these "fake" symptoms to myself.) I was very popular and friends w everyone.
But all of this activity would not stop me from "faking" (mothers opinion) developing Idiopathic thrombocytopenia pupura(ITP) in Feb. of my 8th grade, local hospital had only ever had one other case. This led to Mono, & severe liver damage. Spent 10 days in hosp. in sterile isolation. finally got well enough to go home, after 15 days. This ITP knocks your body out!! I was so tired I slept for hours on end & still was tired. It was 6 wks. before I had enough strength to walk to mailbox & back (200 steps)by myself without resting. I never returned to school that Year I had a inhome tutor so I would be able to complete 8th grade on time. I could only be up a few hours at a time them Iwould collapse from exhaustion & sleep for hours.
Then for the next 3 1/2 yrs. after that I would collapse in horrendous abd.pain. They would do tests & nothing showed, so when they would operate they kept finding internal hemmoraging, and female organs literally torn apart from cyst ruptures, they would repair as best they could. THey kept saying we don't know how the damage could of happened without tests showing this or me complaining about before collapse. Many times they would have to give me blood or platelets to build me back up. One of the last times when I collapsed in hallway at home, I was delerious, I was looking down at myself crying out for help, trying to tell them that I was in pain, but my voice wasn't heard by them. my mother was slapping me saying I was drunk and On drugs. My dad was trying to shelter me from her, finally 2 older brothers pulled her off of me. They took me to hospital where I was critical, again another surgery, more blood, to repair the damage.
To shorten this story I'll just tell you the high points: I married at age 18 to my husband, we never expected to be able to have children but were blessed with a son & a daughter. But before they came along there were other abd. surgeries, Gallbladder removed showed ok on tests, but when they got it out it was rotted inside & had leeked infection in me. Then I became pregnant @ 22 my family dr. was very cautious letting me know that I shouldn't get excited. Well it went ok. Except I developed toxemia after delivery. That was a trip I was so swollen I couldn't fit into my maternity clothes, I wore a robe no shoes,home from hosp. in DEC. in Ohio, brrrrrr. 2nd preg. When I was preg w daughter I carried her placenta previa, we both literally died and came back at the beginning of my 7th month. We survived, barely. Both kids great.
Still I had medical emergencies with internal bleeding and more surgeries & wierd things happening like waking up with total mechanical bowel block & internal bleeding took them 4 drs., 9 days of uncontrolled projectile vomitting (2 drs. quit my case because I couldn't control vomitting when they gave me stomache meds)Finally a dr said we needed to look inside her, they did and were blown away with the damage they found & that I was still alive with the infection, and blood loss (nothing showed on tests or lab work again!!) He told my mother that I wasn't pretending "she nearly died".
All during these years I still had the symptoms listed above, & they were gradually getting worse. But I hardly mentioned them anymore, because I was told that I was imagining this. Several years & more abd. surgeries later & now bone defects being surgically repaired, I am to the point where I CAN"T go on!!
THe pain, fatigue etc. I have "ignored" these & kept trying to work at jobs all my life, only to be told to quit or be fired. I have the credits, but was denied SSD in 05, With all of the drs. notes from my visits to a nationally known Rheum. university clinic( W/ RA & SLE & other "little" diseases that go w/ them) & my family drs. notes. I was denied & didn't know I could appeal or anything about help of advocates. So I again tried to work ($$ needed), again was given option of quit or be fired. This whole time pain, fatigue, joints, muscles, headaches, weakness, memory fadings, anger at self, feelings of uselessness & guilt & so many other body degenerations are all increasing.
Of course so is the rhetoric from family that I am imagining this, and I am just lazy. Mother has my kids (now 20 & 18) think that I am imagining everything & that I "fake" my symptoms. I have tried to get husb,&kids to go to support groups w me so they could learn about the diseases. They can't go for one reason or another. Now I can't even go because I can't drive self, I can't even walk.
I am 5 1/2 mos out from a bone allograft & screws in talos & joint fusion allograft with plate & screws in talonavicular joint. I have been on a bone growth stimulator since surgery yet, THERE is little to no new bone growth & now I have RSD in it. (thought my pain level was maxed before!!) Yet according to mom &some family this is "all in my head". I don't mean to sound ungrateful toward my mother (I do love her), but she is the only one who can take me to my different appts. (others work &/or college) she goes in the room w/ me and tries to tell the dr. that I just don't want to walk, & that he shouldn't pay attention to xrays or scans that show no healing or me about pian. He just needs to tell me to ignore the pain, & no healing, and walk & take care of myself (which I do except for driving, on bad days I am only able to go to bathroom, don't eat or anything else). And throws an absolute fit when I tell dr. I can't take this pain, that I need relief from this pain. He gave me Cellebrex, it doesn't help! I am really having moments when I wonder what it would be like to end it all so I wouldn't hurt anymore.(thats another issue)
I have just applied for SSD (2/08)again, drs. suggested it. They are not sure what my ankle/foot outcome will be. But suggest that it could be months/years to get this fixed, since my body doesn't "help" in the needed healing.
I have just had first visit with the one and only Rheum. in our area & she does NOT do or support disability applicants or fill out disability forms. SO what do I do?? I haven't been able to go to university clinic for a couple of years, because when I could drive self, I couldnt make 2 1/2 to 3hr drive there. I would virtually fall asleep driving, & be in so much pain from setting& holding steering wheel that I felt like passing out. Few times I made trip by self it took 5hrs. I jsut couldn;t do it anymore.

So I guess it all comes down to this, I have been researching diseases, SSD process (boy have I learned some)on the internet. (Thats how I found HBoard which I have to say has been a ray of sunshine in a very dark world) & now I realize that I need help during the SSD process.

What are some suggestions: Advocate, Allsup, or attorneys?? Any suggestions on drs. or pain management???


I know that this is a "various" subject thread, but needed to give history to help you understand what I have been through & why I am so uncertain of what to do, continue w/ SSD if rejected, because I have NO support from family & no confidence in myself.

Thanks for your time,
AC